Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Google informs me that this is around 5 miles! That sounds absolutely epic.
Obviously full recovery is the dream, but I can't even take a single step right now, so if I could get to walking 5 miles per day I would be elated.
You had improvement from LDN and ART right? That's a good sign you can improve further
amazing if true, huh?
I hope the doc generates a case report. If 3 years of ritux is effective for the severe cases then it might be doing something different than just removing antibodies.
EDIT: They do seem to provide some confusing messages about the timeline, saying they improved after one year at one point and a week ago at another point. My spanish is not that great tho.
Would it take that long?
I'm in contact with a US patient who has been on Rituximab since May. After being ill with ME and POTS for close to a decade, they have gone from a few hundred steps / day to over 10,000 steps / day with improved cognitive function.
I actually know the person you are referring to b/c it is someone I have communicated with via e-mail off & on for the past three years and their story is true. Obviously I cannot say more either without the person's permission but what you have written is correct.
Oh man now I feel silly for emailing you about this. Glad to see you confirming their story though!
@Gingergrrl, @Jesse2233, are you both talking about the same lady as @Murph? If not, how long was the rituximab treatment for the lady you were talking about @Jesse2233? Thank you.
who had significant improvements